And so, to hospital

I hate hospitals.

Really, really hate them.

Since childhood, I’ve been paraded around them for various reasons; hooked up to so many machines I hear the beep in my dreams. I’ve been sick on so many hospital floors, and each and every single hospital visit – be it a planned appointment or a trip to A&E – has left me a nervous wreck.

I’m not ashamed to admit this: I just can’t cope with it. The smell. The horrible lights. The feeling of vulnerability and the worry you’ll never sleep properly again. The strange faces and unpredictable noises… and the memories of the times I’ve been really, really ill. Vomiting up black stuff all over the polished A&E floor, tripping on morphine and hooked up to every piece of machinery in the world. Happily floating on a cloud of prescribed IV opiates, not giving the slightest damn about anything but going to sleep and not waking up again.

So yes.

I really hate hospitals.

hanging-iv-bag

But I also hate being sick. Admitting to a phobia of vomiting sounds weak somehow; it’s hardly the worst thing to happen to a person, but it utterly terrifies me. I suspect it stems from years of bulimia; controlled vomiting is entirely different to actual sickness, and it’s the lack of control I can’t cope with. Vomiting for days on end and being unable to take my meds, wash, dress myself, eat, drink, or even sleep in the same bed as S… it all took its toll, and I ended up in A&E this morning, wired up to a drip and covered in heart monitor pads.

I admit, it wasn’t the plan.

I had an appointment with my GP this morning – to check up on my medications, which need to be raised or changed, how the pain is going… I didn’t make it, because I was busy concentrating on not vomiting in the taxi on the way to hospital.

If you’ve never been scared of being sick, you can’t imagine just how terrifying it is. Every movement, every sound, every thought even… if you feel nauseous, anything can and will set you off, and it’s utterly horrible when it happens. I’ve never vomited as an adult and not had a panic attack during. It’s not a pretty situation.

So I lay there. Sat up. Lay down again. Went to the toilet a million times. Couldn’t get comfy. The only time I’ve been on my own in A&E before is when I took an overdose – the latest in a line of them in my later teens – and my mother flat-out refused to accompany me. I resented her at the time, but I understand why now. I tried to quell the panic by browsing the internet on my phone, reading boring BBC news stories about absolutely nothing, trying to pretend everything’s okay.

18a_Cannula

Also, there was an added fear. One I haven’t mentioned to anyone, not even the doctor; I figured anything abnormal would show in the blood and heart tests. A few days ago I was in so much pain – agonising, screaming pain – that I caved, and begged everyone I know to find me some ‘proper’ painkillers. Z turned up with some 30mg co-codamol and, later, a strip of tramocet. Now, I’ve spoken about my little opiate problem before, but recently it’s been pretty dormant. I haven’t felt the need to self-medicate or block things out with tiny white pills.

However, fever doesn’t work well when you’re trying to be sensible. I accidentally took far too many painkillers; I don’t know how or why I did it, just that I took more than three times the recommended dose. It was in no way a suicide attempt, because I wasn’t truly aware of what I was doing. I just wanted the pain to stop, so I could finally get some sleep.

Then, days and nights of vomiting. Sweating; that horrible chemical-tinged sweat you get with opiates. Hallucinations and awful nightmares.

So that’s how I found myself curled up on a hard bed in A&E, trying to explain my ridiculous medical history, clutching an emesis basin and hating everything hospitals are.

I just can’t cope with them.

They scare me.

 

____________________

Sick to my stomach

Sinking to the depths again
the ones you never quite reach
heart in my hands and head on the floor
wishing I was anyone but me.

Falling for my weakness again
and welcoming it like a friend
crushing my heart between my fingers
– that heart you tried to mend.

Sad, tired eyes searching for you
but my hands can’t seem to grip
aching head and swollen fingers
and the shame because I slipped.

sick in my skin and dead to the world
it’s cold on the bathroom floor
smash all the mirrors and hide the pieces
I don’t want them anymore.

(c) 2006

Sick

Bulimia, unlike many of the things I’ve experienced, is strangely easy to write about. The reason for this is most likely because when I think of myself as being “bulimic”, it’s like stepping into somebody else and watching myself from the outside; almost like a movie. It isn’t real. Even after fifteen years of binging and purging, something inside me still refuses to accept that I could possibly have an eating disorder. 

ED’s happen to other people, you see. Not me. I simply… have a little trouble with food. Since I first made myself sick at eleven years old it’s all been a sort of blur to me. I know it happened, but it may as well be somebody else’s story because I can’t ever quite accept it’s not all a big lie I concocted to get attention. 

“…or does the mind control the body? I don’t know.”

Yesterday I woke up expecting to finally be over the ‘flu after a week of hacking, choking, snotting, complaining and feeling like my head is going to explode. I expected that even I – she of little immune system after taking steroids – would have shaken it off by now.

No. Of course I haven’t; that would be expecting too much. To add insult to injury, I developed a huge cold-sore on my lip, going down my chin and blistering like crazy. This morning (well, afternoon) I woke up, coughed for a while, realised I had no energy and sunk back into bed. A quick glance in the bathroom mirror confirmed that the cold-sore from hell has grown even more. I look like a mutant.

I’m frustrated. Today, a group of friends have gone to the beach to celebrate the solstice. We do it every year; party until the sun rises the next day. I missed the last party due to illness, and I’m missing this one too. It just doesn’t seem fair.

I sometimes wonder if I make things worse for myself; that perhaps I’m so used to feeling sick that I expect it, and maybe I pretend things are worse than they are. I’ve always wondered that. A lifetime of illness isn’t normal, after all. I was sick when I was born and, twenty-seven years later, I’m still sick. I’ve had ear infections. Urine infections. Infections in my cervix. Almost daily diarrhea since I was a child. I went into anaphylactic shock as a baby. My ovaries are covered in cysts and my cervix is full of scar tissue. They removed it, but it comes back. They give me antibiotics for pelvic inflammatory disease but they don’t work. My gallbladder got infected, and my bile duct was blocked; which caused pancreatitis. It took months to recover from having it removed, and again, I was left with scar tissue and a life-long need for strong anti-acids to cope with stomach acid going the wrong way because my bile duct was damaged.

I have a rare type of eczema on my hands and feet; one which can’t be treated by even the strongest steroid creams. I’ve always been prone to eczema breakouts, but this is something else; this breakout has lasted over a year. I’ve been given every cream available, and was turned down for expensive treatment so I’m left with no choice but to live with it. It burns; I need regular antibiotics to combat the infection which constantly breaks out in the cracks, and my skin is scarred from how deep the eczema goes. Most people with this type have it for life, with occasional remission.

At the present time, I am under the care of one of the top rheumatologists in the UK, along with the dermatology department, the bio-mechanics clinic and my own GP. I’m waiting to be referred to urology, and possibly back to gynecology. Sex has become incredibly painful and, afterwards, it burns for hours. The slightest pressure is causing my skin to tear, even on the outside.

Logic says I can’t be inventing any of this because my medical records are stuffed with consultant’s notes, diagnoses, test results, second opinions and operations. Each and every problem has been documented and proven to be real. Yet I still question myself.

Moving forwards

I’ve been on Lyrica and Celebrex for three days now, and I think the Lyrica started working today. I noticed I don’t have any muscle spasms – for the first time in months – and apart from a day of dizziness (similar to being high as a kite; quite a good feeling) I’ve had no side-effects. I’ve always reacted quickly to drugs, so it’s entirely possible it’s starting to work. The lack of twitches and jerks is noticeable, and for the first time in ages I had a calm, restful sleep last night.

Celebrex is working wonderfully this time. It didn’t seem to make a difference when I was first given it for neck pain a couple of years ago, but it’s taken a lot of my ankle swelling down, and my fingers don’t seem anywhere near as painful. I didn’t even have backache when I woke up yesterday.

S has been ill with a virus and we’ve spent the weekend in bed together, watching trashy televison. Programmes about Australian customs and British police shows; the sort of stuff I never normally watch, but which seems perfect when it’s a quiet weekend with little to do but listen to S cough and fight off infection. He’s worried I’ll catch it – I catch every illness going – but so far I seem okay, and I figure it’ll be worth it after getting to spend the weekend cuddled up with nobody to bother or disturb us.

S and I… we’ve been together for fifteen months, and things couldn’t be more perfect. In fact, it’s looking like we may still find somewhere to live; a friend of his lost his grandad a few months ago and his grandmother can’t cope on her own anymore, so the family have found her a nursing home. There’s a chance we may be able to rent her flat, from his friend’s mother. It’s a lovely place; in a huge, tall building in quite a well-to-do area outside the town centre. If we do get it, the kitchen and bathroom will probably be refitted and the flat will be redecorated; so it will be like moving into a new place rather than the quite old-fashioned home it is now. There’s no garden, but there’s a small patch of grass out front and a personal stairway outside which has a canopy, and it’s only half an hour’s walk to the park. Fingers crossed.

I’m not crazy, I’m just a little unwell

In medicine, comorbidity is either the presence of one or more disorders (or diseases) in addition to a primary disease or disorder, or the effect of such additional disorders or diseases.

- Wikipedia

After yesterday’s small fatigue breakdown – which hasn’t improved – I experienced a massive knock-on effect, with various symptoms adding to the already soul-destroying feeling caused by a fibro-flare. Comorbidity is undoubtedly the worst aspect of chronic ilness for me; not only do you have the pain and fatigue from fibro to cope with, but you’re also faced with stomach upsets, nausea, stomach cramps and, in my case, worsening of eczema and skin conditions. None of these symptoms are particularly linked to fibromyalgia on their own, but a flare-up also causes other conditions to rise to the fore; the symptoms of polycystic ovary syndrome get worse and depression naturally sneaks in. My diagnoses are so broad that anything could be causing me to feel unwell, and I never quite know what to blame.

In truth, I cannot remember the last time I was ‘well’ – healthy is simply a word in the dictionary to me – and I confess to being sick and tired of this illness which has dogged me for most of my life. Society still seems to look down upon illness as a weakness, and it’s difficult to feel hope for the future when so many around me are unwilling to accept that sometimes, some people are just always sick. They take health for granted, assuming that because they’re healthy and fit, everyone else must be too. The permanently unwell are treated like underdogs, hardly worth a look-in because they simply don’t do anything useful for society.

Over the years, my health – or lack of – has been the subject of many a discussion. People have hidden behind their keyboards, picking my symptoms and and experiences apart, and sometimes downright refusing to believe that I could have a permanent sore throat and always feel like I’ve got a bad cold. I’ve been called a liar and a benefit cheat by complete strangers; people who have never met me yet believe they know more about my illness than I do, and who look down on me as though this is all my fault. As though I chose to live my life this way.

I have said many times before that I’m sick of always being sick, but I’ve never meant it as much as I do today. In my teens, the health worries didn’t seem so bad; the future stretched out forever and I believed I had an eternity to improve. Adulthood seemed like a magical place where sickness never happens, but, of course, I eventually learned that becoming an adult doesn’t magically take away all your problems. Now, three years away from thirty, I realise that this is impacting hugely on my future, and the uncertainty of my prospects is weighing down on me.

Today’s symptoms are fairly nondescript; sneezing, a runny rose, the ever-present diarrhoea, headaches, swollen glands. The lack of specifics are what’s so disheartening; it’s not any real illness, it’s just a load of symptoms thrown together. Add fatigue and pain to the mix, and I feel utterly flattened.

If all this had a name, I’m sure I’d feel more positive. As it stands, I just carry around the dubious title of ‘always sick’, which helps nothing.

 

 

Crazy English Summer, Part Three

 

crazyenglishsummerPart One / Part Two

I don’t know how long I stayed in the unit the second time. Days turned into weeks, and my brain slowly became mush from the boring daily routines and therapy. Twice a week, we would all be taken into a big hall and be made to do trust exercises – catching each other, that sort of thing – and I hated every moment. I was crazy, not five years old. I didn’t see how running under a big plastic sheet would magically cure my bulimia and general madness. One time, I found myself talking to an empty chair, like the plastic ones we used in school; the patients were encouraged to sit opposite a chair and pretend somebody who’d hurt us was sitting in it. We were supposed to tell them why they’d caused us pain, but all I achieved from the exercise was feeling like an utter twat. I chose to ‘speak’ to a girl who’d been one of my best friends all through primary school and into secondary, who’d done a runner as soon as I started losing my marbles. I told her that she shouldn’t have given up on me, and that I needed friends. The member of staff overseeing it all said I’d done a good job. Again, I didn’t see how it could possibly help. It didn’t. My heart wasn’t in it.

In fact, I had absolutely no desire to get better; I didn’t think there was much wrong with me or my behaviour. The horse had been led to water, but there was no way I was going to drink; I felt a great injustice at being locked away in some sort of crazy place when all I was doing was struggling a bit with teenage angst.

Evenings were the worst times. The staff gave all the patients a rota for making tea, toast and cereal. I felt enormously guilty when it was my turn; Victoria would chew silently on a piece of buttered toast, tears running down her face, threatened with hospital if she didn’t eat it. Sometimes it took her two hours. We were also expected to do our own laundry, which soon became my nemesis. I avoided it, terrified of breaking the machine or somehow doing it wrong. I wasn’t domestic in the least, and had never used the machine at home. The staff assumed I’d know how to work a washing machine. I never asked; I was too shy.

Oe night, after midnight observation, we heard shouting and door slamming. We peeked our heads out of the door to see Rachel being dragged out. The staff told us to go back to bed, and that she had ‘hurt herself'; we knew what they meant, and so when she came back the next day with a massive bandage on her arm, we weren’t surprised. Again, she’d used a hook to gouge at herself.

It was easy to self-harm, binge and vomit in PL. Although there were regular observations and checks, there were plenty of hiding places. I kept a package of broken razors in the cheap MDF drawers next to my cheap, MDF bed. Carla broke a mirror to cut herself with. We took it in turns to throw up, one listening out for staff while the other tried to get it over with as quickly as possible. We’d troop to the Safeway down the road once a week and stock up on binge-foods, Although it was supposed to be a closed unit (apart from short trips in groups once we were considered ‘safe’ enough. It only took me a couple of weeks to be allowed outside) the door was often left unlocked and staff rarely checked the signing in/out board in the cramped hallway.

One night, one of the patients (Richard; ADHD) went missing. He was soon brought back, and spent the night in an isolation room.

I was never isolated; I was nearly always on my best behaviour. I was still in thrall of authority and was afraid to truly freak out in front of the staff, which proves I wasn’t sick enough to be there. To me, at least. Having my freedom removed was killing me; I’d dream of being at home and cry at night when Carla and Victoria were asleep. I hated showing any form of weakness – the other patients called me mum – and I felt I needed to be strong for everybody else. They seem to be suffering far more than I was.

The psychiatric staff were struggling with my diagnosis. When I was admitted, it was with the belief that I had schizophrenia. I had been hearing voices and had become increasingly paranoid, suspicious of everyone and convinced that they could hear all my thoughts. I’d turn photographs around because I believed they could see me, and dressed under the covers in case there were hidden cameras in my bedroom. At the time, those thoughts seemed perfectly rational, and I’ve never spoken of those delusions before. I’ve been ashamed of them; they’re embarassing.

However, I was believed to be “too rational” to have schizophrenia, and too able to control my temper when I was in company. In fact, by the time I left PL I had been given an entirely clean bill of mental health; I was sane. Nothing wrong with me but the fact that I was fourteen and shy.

Most days were pretty quiet in PL; nothing like mental health units in films. There was the occasional outburst or brief spell of violence, but most of us were too drugged to kick up a fuss. There was only one violent patient – Chris – a tall, wide-shouldered, acne-ridden nose-picking guy with a tendancy to stare at my tits and shout “FUCK!” whenever he thought he could get away with it. He smoked in the courtyard when staff allowed him to, and once I passed him in the hallway. He grabbed my chest and laughed. I never said anything, but refused to sit near him in therapy. Chris would wander into the girl’s rooms, but staff soon shooed him out. I don’t think he’d have done anything; despite his obvious problems he didn’t seem like a rapist. Heck, maybe I should have mentioned it. I just didn’t think anyone would care. One thing I learned in life is that nobody believes crazy teenage girls.

Despite feeling more comfortable being in PL than I did the first time around, I still contested my need to stay there. Needing control has always been my biggest coping mechanism, and you have no control in a mental illness unit. You’re watched; eating, showering, when you’re sitting in front of the TV. You’re forced to play childish games to ‘build trust’ and swallow the pills they give you. If a member of staff says jump, you ask “how high?”, because these people, these so-called professionals, have complete control over your life. We had to sit through a talk on safe sex and, god forbid, how babies were made. Carla managed a sardonic laugh at this. Having been abused by her father since she was six months old, she didn’t feel she needed the biological side of sex explaining to her. I was still a virgin (that would change the next year) but I knew how babies were made, and I didn’t need to be sitting in a cold room, under stark flourescent lights, putting a condom on a banana. I wasn’t a child. If fourteen year olds know anything, they know how babies are made. It’s all they think about, after all.

Then again, Chris sometimes masturbated in the day room, so perhaps it was required listening for some of us.

30 Days Of Truth: Day 1

Something you hate about yourself.

A difficult one. Very difficult because I don’t want to go on a rant about the issues I have with body image, or my perceived personality flaws. I’ve never quite bought the belief that flaws are what make you attractive, at least not huge, damaging, life-changing personality issues. Perhaps my overbite does seem strangely cute to men, and maybe the fact that my hair always kinks at the back is endearing… but, emotionally, I have to keep myself carefully packaged so I don’t alienate everybody around me.

After some thought, I’ve decided that the thing I truly hate about myself is my inability to rationalise perfectly normal experiences, and my need to lean on something chemical or damaging to get me through.

I believe I was born with at least a degree of substance dependence. My father (as I’ve talked about in this post) is an alcoholic, my mother’s sister relied on drink for a long time, my sister E drinks to excess, or at least used to, and I’ve spent a lot of my life around people who have had some degree of addiction. I grew up in the early 90’s, when drugs were still seen as somewhat cool. Johnny Depp was a user. Hollywood thrived on cocaine. Housewives were swallowing prozac like sweets. I imagined the world of drugs and drink to be glamourous in a seedy way; and I always preferred the squalid to the classy.

Don’t get me wrong; I’m not a junkie. I have never injected a drug. I have never touched heroin, and never would (although I did fall for the charms of oral morphine for a few months in 2009, when I was living with J). My true addiction lies with over-the-counter medications, specifically co-codamol; at one point I became the woman who goes from pharmacy to pharmacy, buying as many tablets as possible. It’s a cheap, easily-available failsafe; four tablets and I’m calm. I fully believe it has saved my life many times (it stopped me walking into the sea a few years back), but it’s a dangerous addiction and one which, I believe, has started damaging my stomach and liver.

Morphine was a strange mistress. It made me feel sick and itch, but took all the worries away. By taking it, I quickly learned just how people become addicted to heroin. It simply removes everything bad and confusing from your mind and wraps you in a warm, safe blanket. Until you need more. I started drinking a bottle a day. When J found out, he threw the bottles away and shouted at me… it didn’t help. I suppose I needed some understanding, some way of him getting into his thick head that the reason I’d sunk so low was because of his outrageous, controlling nature and frequent mood swings. On the day he disappeared for a week, I took a large mouthful of morphine, followed by a packed joint, a large handful of co-codamol and best part of a bottle of red wine. I spent the entire week in bed, sweating and having nightmares, occasionally waking to take more pills and smoke more. The house was scary at night, I hated being alone in such a dangerous area.

Would I advise anyone against taking morphine for recreational or emotional use? Yes. I really, really would. The slide downwards is scarily fast. Would I take it again? Probably.

In many ways, my addictions have much improved. It’s been a while since I bought any co-codamol, and I’ve purposely avoided the offer of stronger painkillers like tramadol (another past addiction). I haven’t indulged in other emotional crutches either, like self harm or purging for good few months.

I feel like I have things under control right now, or as much as I can. I’ll always have an addictive nature, and part of me sometimes likes it. I enjoy the debauchery and the hedonism of addiction as much as I am chemically in need of it.